I was born lucky. I was born with gratitude in my heart. It doesn’t mean I don’t have to chase it some days. Some months. Some years. But inevitably, eventually, I find it, sometimes rather deeply buried in the thicket of life. It is not simple, and I do not take it for granted. Each of us has to wade through the brambles to find gratitude when life has us in a quagmire. My life this year, and the year before, has not been easy. On the eve of Pandemic Thanksgiving Week, I tasked myself with exploring gratitude. Inspired by my friend Kim’s application of points to my texts (for example, “I convinced Mark to shower today!” Her response, “2 points!”), I applied a simple point system to recent events. Can I find things to be thankful for in the depths of 2020?
1. Mark’s handicap parking placard gets us a premium spot wherever we go. +1
2. We are trying not to go anywhere due to the pandemic. -1
3. When I take Mark to Aldi, he perseverates on the carts. He stands at the cart depot while people bring up their carts to return. If they offer, he kindly takes the cart. Then he works to lock it back into place so that he can get the quarter. Usually, he makes $1 before there’s a lull and I can get him to walk back to the car. +1
4. He always is willing to carry up the groceries into the house from the car. +1
5. I have to race to grab the heavy grocery bags (which he is responsible for creating at Aldi) because the doctors want him to lift less than 5 lbs so he doesn’t blow out his brain graft. -1
6. If I ask, Mark will make dinner. +1
7. The last dinner he made was a salad. Lettuce with sliced hamburger pickles, raw cashews, dried lentils, and banana. -1
8. Mark made a pie crust for the quiche I was making for dinner. +1
9. It looked like this: -1
10. I asked Mark if he wanted to watch the Sound of Music. He said he didn’t like the movie. Why not? He said “the children are slaves.” To whom? I asked. “To the prince,” he said. Well, I said, the arc of the story is that it gets better. “The arc of the story is ghostly,” he said. -1
11. I know if I ask Mark to watch the Sound of Music with me, he will. +1
12. Two nights ago, Mark stood up from the couch and headed to the basement stairs. Where are you going, I asked. He ignored me and kept heading downstairs. “Are you going to get a screwdriver?” I asked. “Yes,” he said. I knew from prior experience that this meant he was going to try using a screwdriver to dislodge the “crust” from the healing brain graft out of his nose. -1
13. I now am both stronger and heavier than him. I physically blocked him from getting into the garage. Then I hid the screwdrivers. +1
14. If I ask, Mark will fold the laundry. +1
15. He surprised me by also putting it away. Randomly. In many spaces. And I can’t find my clothes. -1
16. When Mark goes to bed at night, I go with him. At 8 o’clock, we settle in. He falls asleep, his head on my shoulder. +1 million.
17. When he looks at me solemnly and gently strokes my face before he falls asleep, I ask him why. “It helps,” he says. +1 million.
18. Every Sunday morning, he sits next to me on the couch and we drink coffee and wait for the thump of the New York Times landing in the driveway. Once retrieved, I hand him the Review and I locate the Style section. We read silently next to each other. +1 million
19. No one close to us has contracted Covid. +1 million
20. We have food and shelter, and family, friends, and love. +1 million
Is the glass half full or half empty? It’s full enough. That’s all I need for today. And for this week. And for this year.
At first I referred to Mark simply as “51.” My therapist had convinced me to get back out there and try dating. I was 44 years old. I felt washed up. “How?” I asked. “Online,” he said. I signed up for Match.com, worked up a not-very-brave, photo-free profile, and started scrolling. The men fell into a couple categories. Guy with sports theme, guy with gun theme. No kids-never married guy. Video game guy. Not much jumped out at me. Eventually, I came across a picture of a skinny man with a broad and genuine smile. Instead of the typical listing of likes and dislikes, he had written a mock interview of himself with Rolling Stone. It was clever, and funny, and it included honest information about his life, his wife’s passing, his love and care for his children. I clicked. We sent a few emails back and forth, then had a slightly awkward first phone call. He asked me out for coffee. Nervous, I drove to the local Starbucks at the mall. I sat and waited. And waited. Nothing. No one. I went back to my car and cried. When I got home, I emailed him. You don’t seem like the kind of person who would do that, I said. A few hours later, I got an email back. He had been in the mountains fishing with his kids the day before. He’d been exhausted and overslept. He was sorry. Could we try again? And a week later, we did. Same coffee shop. Again nervous, I arrived early and walked around the mall. Across the way, I recognized him from his photos. He strolled to the escalator, grabbed both railings, and literally jumped on. Hmm, I thought.
Guarding myself against the fear of a new relationship, I either referred to him as 51 or “White Sneakers,” a jab at how dad-like his attire could be. My household then was a menagerie of people and animals. Alma and Anya were teenagers. Lizzie and her three year old son Toby were renting a room from us. We had dogs, cats, rabbits. A snake. A guinea pig. While the years leading up and including this arrangement had a certain amount of chaos, our home had a feeling of love, warmth, and family. Mark was calm. A rock. “I got this,” he’d say, always ready to help me. He never yelled. He didn’t curse. He was supportive of me spending time with friends. When I took a trip, he would check in but not hover. He was confident in who he was. He was not needy. “I wish I hadn’t done that,” he’d say evenly in reaction to anything he did accidentally. Break a dish, stub a toe. “I wish I hadn’t done that.” And then he’d clean it up, move on.
Mark’s recent scans and testing show that he has treatment-based damage to his brain. He is cancer-free, and for that I am very thankful. The price that was paid for that accomplishment is beginning to come into focus. “It will help me cope to understand what has happened,” I told the doctor on the phone. And so I have learned a slew of new vocabulary this week. Anhedonic. Encephalomalacia. Cerebral ischemia. “It’s like if a road is blown up,” the doctor explained. “That road doesn’t work anymore, but neither do the things that road connected to.” We need to make sure you get the support you need, he said. “Extensive damage.” “It is not reversible.” “It will be dementia-like.” I scribbled down these individual sentences on a notepad, my eyes blurring and my breath quickening. Over time, the path of progression will become clearer.
I joined the “Early Onset Alzheimer’s Support Group” on Facebook. I am doubling down on routines, trying to engage Mark in brain-stimulating activities, exercise, eating right. I do the cost benefit analysis when Mark asks me to drive him to the mall to get Chinese food. Covid, or brain decline? Sitting on the couch, or walking the aisles of stores aimlessly? I am settling in for what could be a long road. Or a longer road, on an already very long journey.
“Wait ’til you hear my last name,” I said at that first coffee. “Wait until you hear mine,” he said back. We pulled out our driver’s licenses to compare. The next date, we went out to dinner. Mark wore an old, poorly fitting sports jacket, but his effort to take the date seriously was sweet. On our third date, we went to see a foreign film. I hadn’t understood the politics of it, and on the drive home Mark explained them. He didn’t poke fun at me. He was not patronizing. His kindness was winning me over.
Early in our dating, Mark always opened the car door for me, a sweet relict of how and when he was raised. Now I am 51 years old. I hold Mark’s hand and walk around to the passenger side of the car. I make sure he gets in safely before taking my seat behind the wheel. I glance over and make sure he’s remembered to put on his seatbelt. I put hand-sanitizer onto his palm. For better or for worse, in sickness and in health, ’til death do us part. Off we go.
It occurred to me today, sitting in Mark’s hospital room, that I may have crossed some strange threshold to where I am feeling more at home with the wounded than the well. Mark was in a double neuro unit room, and we sat silently listening to the chaos in the bay next to us. A young man. Traumatic brain injury, broken pelvis, trach, feeding tube. When the nurse stepped out, he’d managed to get his legs over the bed railing and tumble onto the floor. He’d been at the hospital for three weeks. He wanted out, they said. He knows what’s going on, they said, of the silent young man. The bay filled with hospital staff working together to get him up into bed, restrain him, hustle him off to get a CT scan to check for new injuries. With the bay empty, I studied the objects that remained. A phalanx of happy balloons. A picture of the young man and a buck. Stuffed animals. Cards.
We’ve been there. Some version of there. We’re not there now. Mark can talk and walk. He had not been able to coordinate his legs, for unknown reasons, on Tuesday evening and had fallen on his face. Then he couldn’t answer my questions. Then I called the ambulance. “Have you been here before?” I queried the cop who came, the EMS. It’s a lot to explain to new people, and I prefer shortcuts at this point if I can.
At the ER, all the tests showed nothing new happening. The fall was a mystery. A seizure? Sudden blood pressure drop? They decided to keep him overnight for observation, but there was no bed available yet in the neuro unit. Over 22 hours between Tuesday night and Wednesday night, Mark and I lay side-by-side in an ER room bed, the lights off, the door cracked for air flow. We kept the TV off, and I missed even one ounce of election coverage. I didn’t need that kind of stress. Instead, I listened to the cases going on outside the door. The patient who kept asking for more and more layers of dermabond for a tiny cut on her leg. “Ma’m, I think I’ve gone above and beyond what anyone would consider reasonable,” the young doctor said calmly. “You have a nasty attitude,” she said calmly back. “I want to see another doctor.” The young doctor paused, walked away, walked back. Got the dermabond back out. “Where else would you like some?” he said, and applied another layer, following her directions. There were several traumas that came in by helicopter. Teams of doctors and nurses materialized and waited in the hallway, stationed from elevator to trauma bay. A motorcycle v. car pelvic break that was rushed to the OR. A bloody trauma-based coding. A person with a pulse but not blood pressure.
Mark had his arm around me, sleeping. His cognition was getting better. He went from not being able to say where we were to being able to say we were at a hospital. He went from saying he was “fine” to finally admitting his wrist hurt, leg hurt, lip hurt. He did not remember falling. He didn’t remember most of the evening. I dozed on and off. We waited for a unit bed to open up.
Mark had been having more cognition problems in the past week. A CT scan had not shown enough detail. I was thankful Mark and I had voted early as we headed back to the hospital for a day of appointments on Tuesday. MRI with contrast, appointments with neurosurgery and ENT surgery. The news was not great. The MRI showed that Mark has swelling in his prefrontal cortex. A spot of necrotic tissue, damage from radiation. A graft that is healing slower than they anticipated.
There could be various reasons for the swelling. To rule out infection, they did a spinal tap. “It’s a newie!” I said to Mark, echoing the unfailingly positive spirit of my dad. The nurse and I made small talk with Mark to distract him while the doctor poked into his back. Mark took it as he takes most things medical, with silence and a small wince. To rule out the graft failing, the ENT surgeon stuck the scope back up Mark’s nose, the laser light making the area between his eyes glow red beneath the skin. Mark sat silently as the surgeon poked at the graft, which currently looks like a perfectly roasted marshmallow. The surgeon noted Mark’s brain pulsing underneath. “We’d rather this looked pink by now,” he said, “It’s taking a long time to heal.” He pulled off some of the “crust,” as he calls it, leaving spots of gooey white fat from the graft open to heal. He found some edges of vascularized tissue below. He was cautiously optimistic that the graft was healing from the inside out, rather than what it might have done which is heal from the outside in. “It’s not black,” he said, “so that’s good.”
Mark had a neuropsych exam done a few weeks ago, and the results came back last week. It read like a lot of gobbelty-gook to the layperson — individual tests and results — all the way up to this one crisp, clear sentence: “He is unlikely to recover to a significant degree though important and meaningful compensatory strategies may be learned.” I’m vacillating between trying to understand that one sentence and all its implications, with learning about brain edema and radiation necrosis, with reading a novel about Typhoid Mary and watching episodes of Comedians in Cars Getting Coffee on Netflix. As one does with their leisure time.
Maybe it’s not a bad thing to be comfortable in the world of the wounded. We all gain wounds in some way or another over time. Physical scars, emotional scars. We get injured and we heal and it happens again and we heal some more. Pain makes our world contract and expand, over and over, like a reversible shrinky-dink whose image morphs over time. Like a kid trying to cross the monkey bars, you gotta get some rhythm to your swing and find the next bar. Your hands may blister up but with intention and effort you can get across. Even when you aren’t sure where you will land.
Today we walked out of the hospital into a bright, perfect day, wincing at the sunlight. When we got home this afternoon, Mark pulled off his hospital wristband and gave it to the Pandemic Puppy to play with. I took the loveseat, Mark took the couch, and we flew off into sleep.
4:00am: I wake up as Mark sits up in bed. He finds his shoes and slowly walks to the bedroom door. Is he finished sleeping? Is he relocating to the couch? I roll over and go back to sleep.
6:15am: I give up on sleep and go into the living room. Mark’s asleep on the couch. He wakes up, sits up, says good morning. I let out the dogs and then walk over and pour us each a cup of coffee. I hear Mark say to Robert, “Go let Diane in.” I come out of the kitchen. What did you just say to the dog? “I thought you were locked outside, so I was telling Robert to let you in.” Okay. I check the table and silently register that he has not taken his morning medications. I grab my coffee and book, and I sit down next to him. The puppy jumps onto my lap and curls up. This is one of my favorite times of day.
7:04am: Matthew goes out to catch the schoolbus. On Mondays and Tuesdays, he goes to school in person.
7:05am: Matthew returns, having forgotten his mask. He will do this again tomorrow. And next week.
7:15am: Mark’s vomiting in the kitchen sink. This is my second least favorite place for him to vomit, especially since I didn’t do the dishes last night. My least favorite place for him to vomit was discovered yesterday. After eating lasagne for lunch, he went into the bedroom, opened his sock drawer, and promptly vomited. Half on the carpet, half in the sock drawer. Lasagne. My favorite place for him to vomit would be the toilet. That appears to be his least favorite. I cleaned it up.
7:25am: Mark is back on the couch. He asks me what time Michael is coming home tomorrow. I sit down next to him again, picking my words carefully. “Michael is not coming home tomorrow,” I say gently. “Why do you think he’s coming home?” He looked confused. “I don’t know,” he said, “I just did.” This weekend, he recalled the Ben had thrown javelin in high school when he was on the track team. This did not actually happen. Not the track team, not the javelin. It’s very hard to know what to make of these lapses in memory and cognition. When to let it go and when to say something corrective. When to worry. When to call the doctor. I let this one go.
7:30am: Mark is back asleep on the couch.
7:45am: Bobby arrives. We talk about the most recent person he knows who overdosed. This was a friend of his who has struggled for years with addiction, cycling through prison, rehab, and the final place Bobby sees a lot of addicts go, in the ground. “It’s like when you turn a cucumber into a pickle. You can’t turn it back into a cucumber ever again.” He shakes his head. I shake mine.
8:00am: I go back into the bedroom and log onto Zoom for my first class. Seventh grade. One kid who has a cold is on Zoom rather than in school. Another kid is on Zoom because the family had a Covid exposure and is waiting to get negative tests. The rest of the class is in-person, and joins me by Zoom too. They have a quiz on mitosis, and a lab to extract DNA from strawberries. My classroom co-teacher and I figure out how to give the quiz to the kids who are remote, how to get them involved in the lab that they aren’t there to do. The kids are not happy about the quiz, and they are thrilled by the lab. The seemingly magical ability to pull something from the microscopic universe into the visible. The ability to do anything can feel like a miracle right now.
9:30am: While I have Bobby to watch Mark, I decide to use my break between classes to get in a walk. I tell Mark and Bobby that I’m going to the bike trail. I drive the five minutes to the trailhead, put on my Spotify playlist, sing aloud on the empty trail. I watch the trees go by, working to hone my tree identification skills. I watch for birds. I spot nests that have been hidden behind the screen of green during the warm months. I stand at a river crossing and watch the bird action in an old sycamore tree. Beneath it, I find one of my holy grails: juncos. An early sign of winter. I love watching for early signs of the next season. Plants tell you where you are in time. Birds can tell you where you are going. If only life were that easy.
11:00am: Mark is asleep on the couch when I get back home. He wakes up when he hears me. I go into the kitchen to heat up plates of lasagne, one for me and one for Bobby. I overhear Mark tell Bobby he can’t workout because we are going somewhere. I go over and sit next to Mark. Where do you think we are going? He looks at me and says nothing. I ask again. And again. Finally I decide to make sure he’s oriented. What day is it? Friday, he says. Hmm. I ask the month, the year, who’s going to win the election next week? “Trump,” he says. At least he understood the question and named a candidate. Since we did early voting two weeks ago, he’s asked me a few times who won. Bobby and I yuck it up a bit about the election, already knowing we are on opposite sides.
11:10am: I am back on Zoom, teaching.
12:00pm: Time for Bobby to leave. I relocate from the bedroom to the living room to continue teaching by Zoom while keeping an eye on Mark. He watches me teach. I watch him watch me.
12:15pm: Bobby calls me to debrief about how Mark seemed. We both thought he seems more confused today. Bobby said Mark didn’t know where I was after I left for my walk. It’s not enough to escalate it to a concern about something acute happening, we decided. Just a watch and wait. Bobby’s going to try playing some poker as well as exercise with Mark when he comes back on Wednesday, to give Mark’s brain and body both workouts.
12:30pm: My class ends. I sit next to Mark, and I try to as casually as possible ask him what he remembers has happened so far today. He’s quiet. Nothing. He finally says he doesn’t remember anything. I give him a kiss, and he goes back to sleep. It’s maybe his fourth nap of the day. Why is he so tired? We did take a walk at the mall yesterday, and he was able to do the full lap upstairs and downstairs. Still, this seems excessive.
1:00pm: I have a Zoom meeting. Mark is still asleep. I decide to leave Mark alone in the living room.
2:00pm: I come out to find that Mark is still sleeping. I wake him up and ask him if he’s had lunch. Yes, he says. What did you have? “Lasagne,” he says. I check the kitchen. No new dirty dishes. I leave it be.
2:35pm: Matthew is home from school. Mark and I are on the couch. Matthew maintains eye contact only with me as I ask him about his day. When did that start? I wonder. He tells me about his mythology test, about how far his balsam wood flyer went in engineering class. I checked his learning management platform online, and ask about a couple missed assignments while praising him for his good grades. Mark listens quietly, not asking any questions. I’m not sure if he can hear Matthew well enough. Matthew grabs the leash to take Duppy for a walk.
2:45pm: Mark is back asleep. I think about dinner. It will take me an hour and a half to make. I should have dinner ready by 6:00pm so that I have time to clean up and shower before our nightly schedule of news, Jeopardy and Wheel of Fortune starts. If I do an hour more of school work, I can fit in a nap before dinner. I get going, keeping my eye on Mark, the clock, work, Matthew, and our life.
7:00pm: Dinner is finished. The dishes are done, the trash is taken out, I am in my beloved Laura Ingalls Wilder flannel nightie. We are watching Jeopardy. A Biden commercial comes on. Obama is the narrator, giving a beautifully composed speech over the images of Biden. “I miss having a president who was a good speaker,” I say. “He’s still president,” Mark says. I pause, looking respectfully for the logic. Coming up short. “Who is still president?” I say. “Obama,” Mark says.
8:00pm: We say goodnight to Matthew. Retire, as the old folks say, for the night. We lay down in bed. I realize I don’t have any water to take a nighttime medication of my own. Mark hands me his water bottle. “We’re a team,” he says. Yes, yes we are. I ask Mark if he’s done his sinus rinse. He says yes, he did it this morning. I check. There’s almost, if not completely, the same amount in the bottle as yesterday. “Well I didn’t use it all,” he says. “You’re supposed to,” I said. My mind flashes to last week, watching the ENT surgeon scope him yet again. Watching Mark flinch and cringe as they clean his sinuses, the light from the scope glowing under the skin between his eyes. “It’s a waste,” he said. Of what? I ask. It’s water and saline. It’s pennies. It’s nothing. The use of logic fails. He doesn’t understand. I kiss him goodnight. “Goodnight, baby,” he says and, starting my second favorite part of the day, wraps his right hand around my arm and falls asleep.
A large percentage of my days are spent close to this guy. We nap together on the couch. I sit in the living room and Zoom teach, and he watches me while I watch him. A friend asked me the other day if Mark’s ever left alone in the house. I think in the last 15 months, he’s been left alone for maybe 10 minutes, once. Some days it seems so very hard, and some days it seems like a slow, quiet gift. Today was the latter. Thankful.
One day last week, Matthew came home from school and told me he’d gotten a text that his cell phone service was suspended because our payment was late. Ugh. I grabbed my laptop to log into the account. Mark was sitting on the couch, listening. “I just paid the bill yesterday,” he said. This would be a normal statement in most households. In ours, no. Mark hasn’t paid a bill in about 14 months. And 15 months ago, the bills were paid in wacky ways. $2500 sent to the electric company, for example, which they refused to return.
“Mark, you need to talk to me about the bills if you want to start paying them. Otherwise, everything is going to get confused. How did you pay it?” “What do you mean,” he said curtly, “I paid it.” He does this a lot lately: comes back with a retort that is designed to shut down further inquiry. When he’s not sure what he has done, he tries to mask the deficit.
The account was indeed suspended. I finished paying the bill and then tried again. “Mark, I need to understand what you did.” He said he paid it on his phone. I went and got his phone. Show me. He opened up his texts. There was the text from Cricket, saying service was suspended and giving the link to pay online. In response to that text, Mark had texted back, “$100.” “So now you paid again,” he said. “No,” I said, “yours did not go through.”
Sometimes I try to explain things to him. This was not one of those times. I left Mark with Matthew and drove to the bike trail. Here’s what I thought while riding: WHY, HOW, HOW LONG. How could he think that sending a text would send money magically through the air to Cricket? How long until his brain gets better? Will it get better?
And then I checked myself. Two days prior I had asked Anya to show me how to use my new bluetooth earbuds. “First, you have to charge them,” she said. “YOU HAVE TO CHARGE BLUETOOTH EARBUDS IN ORDER TO USE THEM?!” This seemed like just a tiny bit more effort than I had signed up for. The cable to keep track of, the planning ahead, the waiting. “Did you think they just grabbed electricity out of the air ?” she laughed.
Fair enough. We all can think, say, and do goofy stuff on any given day.
BUT REALLY. PEOPLE. It’s been enough. There are ENDLESS things I don’t understand, and things I haven’t understood, related to Mark. I build up strength, use it all, then think that if I stumbled upon something like the Le Brea Tar Pits I could just lay down and sink. Maybe that’s what happened with all those animals. Maybe they were just too tired to go any further. Instead, I change into my new Laura-Ingalls-Wilder-would-have-worn-it flannel nightgown at 5pm and pour myself a glass of wine.
Two weeks ago, Mark had his CT and check-up with neuro and ENT surgery. The “all is going well” was tempered with “we’ve been crossing our fingers and waiting to see what happens” and “not out of the woods yet” and “limping along” as a descriptor for his recovery. As usual for a visit, I grasped a little bit more about his medical situation. New words to look up, new pieces of information shared. As usual, I felt overwhelmed by the things I didn’t understand. Something about squamous metaplasia in the pathology. “Could be damage from radiation treatment, could be precursor to cancer cells.” I blinked at the doctor a few times. “You’re the first person to say that to me,” I said. “Well, we’ve been focusing on other things first,” he replied. “Plus,” he said, “we removed them.” I tried to let that sink in to be the comfort he meant it to be. I’m still trying.
He continued on. There’s two dangers we are looking out for, he said. If the sinuses get infected, his forehead bone can get infected, and then we’ll have to remove that. And add another tissue graft. I blinked some more. I wondered how much of someone’s head you can remove. What’s the tipping point on that. I stayed silent.
There was more. Something about the fat graph will eventually do something. Disappear? Disintegrate? Dissolve?
My mind was full.
One strange, strange thing about all this is that Mark does not seem to be experiencing it in any way similarly to how I am. He does not talk about how he is feeling or doing. Sometimes I’ll ask. “Do you ever feel sorry for yourself?” No, he says. “I’m 57 and i’m in great health.” Otherwise? Did he mean to say other than EVERYTHING THAT IS NOT GREAT? “When do you feel like you’ll let your guard down about the cancer reoccuring?” I ask. “February,” he said. I, on the other hand, know that he has years of scans every three to six months ahead of him.
We were watching TV the other night, and a political commercial about Social Security came on, threatening that it will run out in three years. “Do you worry about that?” I asked. He said it’s not going to run out in his lifetime, but it may in mine. I asked how long he thinks his lifetime will be. He said he’s going to live to 95 years old. I asked him how long he thought I’d live. I’m six years younger than him.
Yesterday, I took a self-care day. Bobby came to watch Mark, and I started my day with a bike ride with my dad. We rode 21 miles in the perfect autumn air. After we parted, I bought myself a sandwich and sat in my car by a lake, watching the fishermen. Then I crawled into the backseat and took a car nap. Then I took a hike.
Bobby called to say Mark had gone out for a walk. He wasn’t sure if that was okay or not. Well, I said, he does that sometimes. Stay til he comes home? Matthew was home from school already. Somehow our communication failed, and when I got home Matthew was home but not Bobby. And not Mark. I called Bobby. What time had Mark left? We figured out that he had been gone for at least an hour. Too long. I got in the car and drove around the neighborhood. No Mark. I drove up to the community garden and did a lap. No Mark. I came home to Matthew. I don’t know what to do, I said. I couldn’t image where else Mark could have gone other than into the park that is about a half mile walk from our house. The 700 acre park that is a maze of trails through woods and meadows and ravines and a creek. I called my friend Kim. “Don’t panic for at least 45 minutes,” she said helpfully. I called our neighbor Corinne and asked her to watch the house for him returning. Matthew ran up to the park and began running the trails to look for his dad. I drove to the park and started from another set of trails, running and looking.
My phone rang. It was Corinne. The police were in my driveway, with Mark. Someone had called him in, and they had picked him up. He had walked at least four miles, three of which were down a road without sidewalks or a shoulder where cars regularly go 50-60mph. He had tripped and fallen into the road, and a construction worker saw him and told him to sit tight and they’d get help. They thought he was drunk. “Buddy, you are in the doghouse,” I said when I got back from the park. He was lying on the couch. “Why?” he asked, his face total innocence. I explained that it was scary to me and Matthew. I explained that Bobby would feel terrible because Mark left on his watch. I didn’t show anger, because he really doesn’t understand in those moments of decision making and aftermath that he’s done anything out of the ordinary. He said he just wanted to go for a walk on a nice day, and went further than he expected.
I really cannot describe this level of stress and exhaustion. And confusion. Mark is and has always been very intelligent. I Google frontal lobe damage again. I find an article: “Frontal Lobe Paradox: Where People Have Brain Damage But Don’t Know It.” I find others. Problems with executive functioning. Self-monitoring. Developing insight. Empathy. Check check check check.
It helps, and it doesn’t.
Good morning, he just said, coming into the living room at 3:45 pm after a nap. “Good afternoon,” I replied. He glanced at the clock. “Wow, is it really that late?” I think he may think he’s slept so long that it’s the next day. He stands up stiffly, his legs tight and sore after his big walk yesterday, and goes to make himself his regular breakfast, ramen.
There is a lot I will never understand about his experience. There’s a lot he will never understand about mine. Yet here we are, wedded to each other, limping our way through.
Honestly friends, today was not great. Mark was not great. But I did have this amazing high point: honoring the vegans and Jews in my life by making vegan pesto and challah with Anya. Off she goes, a Ball jar of pesto in her backpack and a box of warm challah strapped to her bike. I just love this kid of mine.
It’s a confusing time. Mark’s confusing, if not always clearly confused. Many times each day, I navigate whether to question his statement, or his action, or to leave it alone.
“Do you want to go for a walk?” I asked Mark last Thursday. He’d been home for five days. “It’s too soon,” he replied. “Relative to what?” I asked. “My surgery,” he replied, with a this-is-so-obvious-Diane tone. Of course. Taking a walk would be absurd. Although we had taken a walk a few days before. And the day before that. And on Wednesday, he had mentioned that he was thinking about going for a run. “Um,” I had said, trying to think of a way to not just say NO! which he tends to respond to defiantly. “Your graft is still healing. How about if we ask your doctor about it? You’re seeing him on Friday.” “Okay,” he said reluctantly.
We were sitting in the front yard. He had just gone over to the garden and broken off three purple coneflower seed heads, wrapped them in twine, and hung them from the maple tree. He’s done this several times this summer. He says he’s feeding the goldfinches. It’s unclear to me why he thinks hanging them up is better than the birds finding them on the plant. I choose to not delve too deeply. There’s something endearing about this little display of care for the natural world.
Last Tuesday, a visit from the home health nurse led to a call to the doctor which led to a recommendation to go to the ER. Mark had had two seizures the day before. These were the “happy legs” kind of seizures — as opposed to the oh-no-his-brain-is-on-tilt kind — where he looks like he’s riding an invisible surfboard precariously. The first one was short. I caught just a little something out of the corner of my eye, a wisp of a hint of a wobble, followed by him holding onto a door frame. “Whatcha doing?” I casually asked, going over to stand next to him. “Nothing,” he said, immediately moving into secrecy. He always wants to hide his seizures, and he invariably denies them on first approach. And often on second, third, and fourth approach. An hour later, his legs began wildly shaking as he stood up from the couch for dinner. I went over and held him until the shaking stopped.
The home health nurse didn’t like these seizures, his blood pressure, and that he had been having headaches on and off. Surprisingly it only took a bit of convincing to get Mark to agree to get in the car with me. Back we went to Presby. The empty waiting room was encouraging. Hours later, I realized that they are simply processing patients differently due to Covid and in actuality the ER was plenty packed. We settled into the examination room for the long wait. I lifted the side railing to Mark’s bed and climbed in next to him, wedging myself between him and the railing. When the ER attending came in, he gently told me that the beds are only rated for one person. I could push together the two folding chairs in the room instead. “I’ll get you a pillow,” he said. I pushed the chairs together, curled up across them, and fell asleep.
I was woken up by a crowd of ENT and neurosurgery residents and fellows coming in to assess Mark. I recognized many of them. I’ve grown fond of this gaggle of eager young doctors. They’ve been following Mark around since early August. I’ve seen them in hallways, ICU rooms, and on the neuro floors. The surgeons, with many years of doctoring under their belts, are often relaxed and affable. The residents and fellows are not. They are all hustle and earnestness. They have something to prove. They bring out my mothering side. I want to tell them they’re doing a good job and feed them a sandwich. I make jokes to try to get them to smile.
Mark got all the tests. All the bloodwork, EEG, EKG, CT, xray. By 6pm, five hours into our visit, we were waiting for an MRI. From the room nextdoor, a howl went up, followed by wracking sobs. A woman, loud and clear, wailing. Mark and I sat quietly, not discussing it, just listening. At first I thought she was in physical pain, but after hearing her sustained cries for thirty minutes I realized this must be emotional pain. I recognized it as a mother. I recognized the sound from having made it myself exactly two times in my life: both related to when my own children were in crisis. I didn’t know the nature of her despair, just that it was touching a place deep, deep inside her.
Soon, we heard crashing sounds as the woman flailed in her gurney, rocking it against the wall over and over again. Mark started up with his I’m-at-my-breaking-point mantra. “How about we just leave?” he said. I went into the hall. There were six hospital police officers outside the room and two nurses in the room trying to calm our neighbor. I went found Mark’s nurse. “I will not be able to keep him here. This is adding to his stress. Can you please move our room?” She’d try. Thirty minutes later, the woman was still howling. Mark got off the gurney, gathered his things, and I followed him into the hallway. We are going to have to leave, I said to the nurse. Please. Put us anywhere else.
By 8pm, we had been relocated to a quieter room. We were still waiting on transport for the MRI. I had climbed back into bed with Mark again, far too tired to care about reprimands. Mark turned to me. “You ready to get out of here?” “Let’s wait a little longer,” I said. I turned on the TV. Old nostalgic TV shows can sometimes distract him. I tried Andy Griffith, and then ended up deciding on a documentary about Peggy Lee. He relaxed for a few minutes, then started up again. Sigh. “How about we stay until 9pm,” I conceded, “and if they haven’t taken you back by then, we can go home.” I went out and asked the nurse for help. “Take him to the MRI waiting room, do anything to make him think things are moving forward. I can’t keep him here. He’s going to bolt.” She got Mark changed into a gown. At 8:50pm, Mark put his street clothes back on. “Time to go,” he said. Wait, I said. Let me see. Maybe they are coming right now.
They weren’t. Mark was out of the room, in the hallway. Just as I led Mark back over to the nurses station, transport arrived. Mark snapped at me. “Of course! You told them we’d leave at 9, and they show up at 9:10.” “Don’t yell at me!” I snapped back. “If you want to leave, fine. But they are here now. We’ll just have to come back tomorrow for the MRI if you don’t get it now.” He grumpily got back on the gurney. Transport wheeled him away.
I sat on the folding chair and waiting another hour until he returned. Mark hopped off the gurney and said, “Let’s go.” We walked back to the nurses station and I told them, again, that we were leaving. “Can’t you wait until the MRI results come back?” No, I said. I was done, too. I was tired, exhausted, unhappy that I had been snapped at, unhappy that it is so, so hard to keep Mark alive, and that sometimes he is part of that problem. You can call us, I said. The doctor came with the forms for Mark to sign out AMA. Mark picked up the pen while the doctor ran through the list of “what if’s.” You could have had a stroke. You could have a stroke. We need to know what’s happening. Mark handed the papers back, and we left.
It was 11:30pm when we got home. I climbed into bed and immediately felt a sharp pain on my leg. I jerked aside and scanned the darkness. A wasp crawled across my bed sheet. I had laid down on a wasp. It was that kind of day. I whipped the wasp off the bed with a quick stroke, then thought better of it. I retrieved the wasp from the floor using a washcloth, took it outside and released it into the night.
The phone call from the ER doctor came in at 6:30am the next day. The MRI showed the same thing as the recent CT scans. Mark still has air and/or fluid in his brain. It has not reabsorbed yet. It’s stable, while not resolving as quickly as anticipated.
We are back to our daily routines. They are keeping me sane. I take walks when I can; I teach and attend meetings via Zoom. Mark is a slop bucket of contradictions. I’m a slop bucket of emotions as I continue riding on the Mark train. It’s impossible to predict if he will understand something, remember something, respond to something appropriately or correctly. If we’ve been sitting out front, on the way in he rings the doorbell. The dogs go crazy. “Why are you doing that?” I ask. “To agitate them,” he says pleasantly. Yet when the dogs play fight together and excitedly bark, Mark always calls out, “Quiet!” On a Zoom call Sunday with his kids, Mark stared at the video feed silently. He doesn’t seem to know how to interact in this format. The only question he asked Ben was how his roommate situation is at college. Ben is in a single. Mark told the visiting nurse today that he has no upcoming doctor appointments, although he was with me when a CT scan, neuro, and ENT appointment were scheduled for next week. He turned to me tonight and asked if I was going into school tomorrow. “No,” I said patiently. “You’re working from home?” he said. “Yes.” “You’re always working from home now,” he stated as if he had just retrieved the information from a vault in his head. “Yes,” I said. “Maybe we can go for a walk tomorrow,” he said. Then we went back to watching Jeopardy, where he answered some obscure question about Franklin Pierce correctly.
Yesterday, I was on a Zoom call with a former student. This student is one I taught way back when they were in elementary school, and then again when I had been moved up to teach middle school. I always felt a connection with this kid, who now is bravely forging their own unique path through adolescence. They are running into hurdles. We’ve zoomed a bunch this summer, bridging the divide of quarantine and avoiding the pitfalls of isolation. Five minutes into zooming, I looked over at Mark sitting on the couch. Blood was dripping off his head. “Umm, hold on, kind of an emergency!” I said to my student. I put down my laptop and rushed over. “Did you fall?” I asked, studying his head. No, he said. He’d picked a scab from one of the drain locations. “It’s a lot of blood, Mark.” I got a tissue and a wet cloth and wiped up his head. I told him to keep the cloth on it until the bleeding stopped. I went back to my Zoom call. Mark obediently kept the cloth on his head until I was finished.
“Don’t pick your scab,” I said later. You don’t want an infection in that part of your body. “Right,” he said.
A few hours later, he was touching his trach scab. “What are you doing?” I asked. “It’s crusting. It’s gotta go,” he said.
I have been pishing. That is, I inhale deeply, blow air out of my mouth, and make a repetitive sound: pish pish pish pish! Way back when, I worked at an environmental education camp in Vermont. I learned this as a sound to call in small birds. You are not mimicking another bird, you are creating a strange noise that the birds are curious about and fly in to check out. And then you check them out. Try it in the woods sometime. It works. Try it in your car or home, and you have the equivalent of a self-care deep breathing exercise. Instead of calling in birds, you pish out stress.
Mark’s home. I really do not like using the word miracle. I mean, I’m a science teacher for goodness sake. And yet, how can we describe this? Luck? Skill? Perhaps a combination of all these things. My brain keeps working to find analogies to explain what has happened, what is happening. Sometimes, I told my brother Scott, I come up with an analogy that feels like that perfect sound of a bat making contact with the baseball. That sharp crack and the ball heads out over the field, going and going until it’s gone. Lately, I feel the wiff.
I felt that this morning trying to explain to Bobby, in the five minutes between his arriving and me leaving for work, what he had to watch out for to keep Mark safe, and why. Instead of “they removed his skull base” which seems a little harsh for 7am, I thought to say, it’s like his skull is a ziplock bag. The bag holds his brain and the cranial spinal fluid. The surgeons cut out part of the bag and then attached a different piece of plastic and now we are waiting to see if that plastic part holds.
That seemed too harsh, too.
“Mark has a headache. That can be a sign that the graft may have a leak. If he starts not making sense, or not responding to questions, or if clear fluid starts leaking from his nose, that’s when you throw him in your car and drive to Presby, or you call 911.”
Bobby, who is never at a loss for words, seemed at a loss.
I thought about Mark as I drove to work. It felt today as it has in times before: like I’m leaving my preschool kid alongside of the road to fend for themselves while I go to work. Listen, I know that sounds horrible. That said, at the hospital a few weeks ago I did, by accident, call myself his parent. And keep in mind I never leave him home alone. Still, the guilt is there. The sense that he is so, so vulnerable.
He’s doing incredibly well. His incisions are mostly healed, with the exception of the hole where the trach had been. This hole, which from a science perspective I am delighted to learn is called a stoma (same name for the holes in leaves that allow respiration; same root for the word stomach), is a dime-sized dark cavern. Damp, dark, mysterious. And hopefully, closing soon. I was in over my head last week when I watched them pop the trach out, and scope up and down his windpipe. I had just watched them scope up his nose, to the base of his skull. “It’s pulsing nicely,” the surgeon said to the attending fellow. “Can you tell me what we are seeing?” I said, looking at the monitor. “That’s the graft,” the surgeon explained. “It’s pulsing because the brain is pulsing behind it.” The brain pulses. Things I had never thought about.
“The graft looks like a living, breathing piece of flesh. Fatty flesh,” I texted to a few people. My friend Sam, ever helpful in rational responses to impossible emotional experiences, reacted to this news with research. The delay from heart to brain would be in the range of 0.1s, he reported. In my group chat with my kids, they reacted with a variety of vomit and horror responses.
Can I again say that Mark is doing so well? Really, truly, amazingly well. He can walk independently. He seems safe on his feet. The OT gave him a good-to-go evaluation today. He’s enjoying a beer here and there (I CAN’T CONTROL HIM, PEOPLE). His appetite is better than ever.
Neurologically, he’s variable but largely good. Yes, when he answered the house phone and then listened for a while before hanging up, he reported that it was “someone wanting me to vote on a pencil sharpener.” Yes, when he finished eating his beloved ramen directly from the pot, he used the ramen spoon to scoop ice cream into the pot and ate that, too. Yes, he called our pandemic puppy Robert “Bobert” on Sunday.
Last night, he fondly said to Robert, “Good night, Albert. You’re a good dog.”
The neurosurgery nurse called today to say that last week’s CT scan shows there’s still some air in Mark’s brain. “It could just be taking longer than usual, but it should have reabsorbed by now.” They added a CT scan on Friday. I’m hopeful that the air will be less. If not, we are hopping back on the medical merry-go-round.
My school is so incredibly wonderful and is allowing me to start the year remotely. “I get it, Covid,” a few parents have said. Really, it would be a luxury if what I was worrying about was Covid. I am not even there yet.
Let’s see…what is a good analogy for this experience? It’s like taking care of a two year old who’s totally confident he is mostly fine. Whose brain was like a bucket of white paint with some red paint spilled into it. And then the paint was scooped out, but we’re waiting to see if the bucket has a leak.
It’s like trying to hold sand in your fist and doing pretty well, unless you look closely and see some grains are always falling.
Years ago, Mark taught me that in engineering, when you find something on a document that you are reviewing that needs further review, you write “UNSAT” on it. Unsatisfactory. Go back and try again.
My analogies are unsat. A little sand is falling. The ziplock bag may be holding. Occasionally the bat hits the ball. Some birds come in to check out the pish. There’s very little I can do except to just keep pishing.
Yesterday was dumb hard. It was ridiculous. The case manager called to tell me the treatment team’s assessment of Mark. Contact-level assistance for tasks of daily living: standing from a sitting position, walking, toileting, bathing. He “often” is oriented. He “often” can remember things. Does he have a transport chair? A walker? A bedside commode? Safety bars for the toilet? A shower chair? Do I work outside the home? How many stairs are in the home? Are there kids at home? He’ll need someone with him full time to make sure he is safe.
Yes we have it all. Yes, I’ve done this before. Yes, it’s still intimidating. His target date for discharge is August 29. I have eight days to get ready. I mean, I am ready. Am I ready?
The case manager casually ended the call by saying, “And I’m sure the nurse called you to say that he pulled out his trach.” “WHAT?” I said. “Oh, they should have called you,” she said. “It’s okay, they checked his oxygen levels and he’s at 100%, so they decided he doesn’t need it.” “THAT’S NOT WHY HE HAS A TRACH,” the tension raising my voice another notch. “Did they call his surgeon to see if it’s okay? It’s there to keep pressure off his skull base, not to give him oxygen.” She said she’d check and call me back. I called the surgeon’s office. I called the rehab’s nurse manager. I got into my car and drove over to the rehab, even though I know I’m not allowed in. I needed to see someone and to see him, even through a window.
When I got there, I went Mark’s room window. He wasn’t in there. I went into the lobby and asked to speak to the case manager and the nurse manager. When they came out I explained, again, the purpose of the trach. They were reaching out to Mark’s ENT surgeon. They assured me they were on it.
I went back to Mark’s window. He was sitting in bed. I pointed to my phone and called his room phone. He picked up his phone and waited patiently. He didn’t know how to use it. I hung up and called the nurses station to ask them to send someone down to help him. Once we connected, I made the usual small talk. It’s become very small, because his world is small, his memory and cognition is variable, and his hearing is poor. Finally, I said, “I heard you took out your trach.” I could see through the window a patch of gauze covering the hole. “Why did you do that?” “What?” he said. I spoke slower and louder. “THE THING IN YOUR NECK,” I said. “Oh,” he said, “the triangle in my neck? It was bothering me.” I explained to him, again, why it’s there and why we have to wait for the doctor to decide when it can be removed. We talked for a few more minutes before I drove home.
When I got home, the ENT surgeon’s office called to say that Mark had to have the trach replaced, today. They didn’t have any clinic appointments, so he would need to go to the ER. The case manager called shortly after to say they were working to arrange transport. “It has to be today,” I said. “It has to be soon. If you’re waiting to free up a transport van, I don’t think that will work.” She hung up to work on it and called me back to say they were calling 911 for him to go by ambulance. I hopped in the car and headed back to Presby Hospital. When I got there, the valet attendant said, “I thought you had gone. You were here everyday and I didn’t see you the last couple days.” I told her what was happening. “You’re going through it,” she said, shaking her head. In the ER, I went through security and sat down to wait for Mark to arrive. My phone rang. It was the rehab doctor calling to say that they had been able to place a different trach in Mark’s neck, and that the ENT’s office said that was acceptable. I headed back home.
Late in the afternoon, a director of something or other from the rehab called me. She had received a formal complaint, which I did not lodge but one of the rehab staff people did on my behalf. Had I talked to their doctor and case worker? Did I have any other questions? “Well yes, actually, I have a question about the trach they placed.” “Oh,” she stopped me, “I can’t answer any of those questions.” Okay. “I just want to make sure you know that you can call and tell us information about your husband if that will help us take care of him.” My tired blood started to consider boiling. I understood that her call was to placate the family. But this sounded like blaming. “You’re actually now making me more agitated. I know how to advocate for my husband, and I have no problem doing it. If you have questions about his care, you either have to call me or call his doctor. I can’t know what you do not understand about taking care of him.”
Mark called me last night. He was tired and bored. He couldn’t remember what he had had for dinner. He promised that he understood he needed to leave the trach in, and why.
This morning, the nurse manager called and told me he had taken it out again.